Archive for the ‘NICU’ Category

Jack (left) and Caroline (right). Born at 33 1/2 weeks, photographed at home at 40 weeks gestation.

Squeezed for time, yet not wanting to make this family wait even one more minute for these photos, I’m scanning through images to show them the ONE that will represent our shoot as a sneak peek, and I think well, THIS must be it.

Or this one.

Then I keep looking, and I think, THIS must be the one, the one that shows how happy their parents are to have these two home.

…and how much they were anticipated, cherished and loved so long before they arrived.

And then I found this one, which would make the most stoic person ANYWHERE spring a tear or two, and realized I couldn’t possibly limit this sneak peek to just one.

So I didn’t.

Caroline and Jack and their parents shared the same two NICUs that we did nearly four years ago, and we are in full agreement about the amazing teams our babies had, and how grateful we will always be for their expert and loving care.

Breathing—we do it all day and all night, and almost never think a thing about it, until we’re knocked out with a nuisance of a cold once or twice a year. And having giant healthy lungs, which most of us are blessed with, means that we never really give any thought to tiny premature baby lungs, the size of our thumbs, struggling to fill with air.

But then, this morning I read Julie’s post this morning and thought to myself, “Once again, she says it better than anyone.” While we mothers of NICU warriors might have healthy children today, with just the faintest of scars to show for that time, we carry our own deep scars, etched on our hearts. Perhaps the only way to heal those is to do some small thing in hopes that another baby and another parent won’t have to live through the time we did.

And what seems crazy to me now is that I really didn’t know how sick he was. It wasn’t until a doctor said, “This is really tough…but we think he’ll go home with you,” that I understood he still might not…

I breathed for Charlie that night, sitting by his bed, crying, eyeballs so swollen that it hurt to move them in my head, nostrils scrubbed raw by hospital paper towels. Every gurgle of his CPAP happened, it seemed, because we willed it. His breaths, when they resumed, were only because we worked for them when he couldn’t. Which isn’t true, of course. The tickle of the feet and the rubbing of the belly helped, but it was the drip of caffeine, the caustic burst of antibiotic, and the transfusion that eventually brought him around. It was the science: serendipity and inspiration tempered by years of research and refinement, the careful observation and adjustment, a dedication that awes me. My deep gulps of air did nothing, practically speaking, for Charlie. All they did was keep me upright, somehow, next to the isolette.

Like many preterm babies, when Charlie was born, his lungs were immature. They lacked surfactant, a substance that keeps the lungs from closing and collapsing upon exhalation, and couldn’t stay open on their own. The development of artificial surfactant therapy, funded by the March of Dimes in the 1980s, ushered in a tenfold decrease in the number of babies who die from RDS (respiratory distress syndrome). Three doses of surfactant and five years later, Charlie’s not only alive but thriving, the only artifact of his prematurity an occasional touch of asthma.

I can’t write it like Julie does, I but I join her today in her offer—in honor of our Henry, and Julie’s son Charlie and my beautiful niece and nephew Isabella and Andrew, born at 30 weeks, I will donate a dollar to the March of Dimes for every story you share about prematurity touching your life. One per reader, please.

Uh, wrote most of this on his birthday last week, but now he is three and one week, just for those of you keeping track.

Dear Henry,

Today you are three, and all day long I was shocked when I saw you. Tall, lanky and so darn THREE, and I just have no idea how we got here so quickly.

Henry with at least three pairs of underwear and one pair of shorts, donned Henry-style.

I do get it, you really are a three-year-old now. You dressed and undressed yourself today more times than I can count, and you sometimes put on up to five pairs of underwear at once, “Just in CASE, mama!” You would think by now I wouldn’t be surprised when I look up and see your naked bottom streaking by, AGAIN. You’ve inspired statements I never envisioned saying, like, “We don’t sit naked at the table, Henry.” Or “We put on underpants to eat snack at the kitchen table.” (To which he sings out, “No WE don’t, Mama!” And giggles.) You took yourself to the potty more than once, without even letting me know you had to go. (Now entering week three of potty training and on the upswing.)

You asserted yourself the way you never did when you were two, announcing exactly what you wanted your cake to be (a fire truck) and what you wanted to today (pick strawberries).

The firetruck cake. Saved by a fellow nursery school mom who had the FIRE TRUCK PAN. Good friends to have.

You sang happy birthday to yourself over and over, you made yourself a birthday card and you insisted on the crowd favorite, THE BLUE CUP, for lunch and dinner. You have a true passion for animals, all animals, and need to be restrained around ones we don’t know, because you want to hold them and love them and cuddle them, unlike your brother who was fearful of most most four-legged creatures at your age.

You would have been inside the pen, hugging and kissing that cow if I had let you, Henry!

But, for all your three-year-old bravado, you are still my sweet baby Henry. You like to play cat, and one of your favorite versions of the game is to curl up in my lap, meowing, and say, “I love you, mama cat!” To which I, of course, answer, “I love YOU, baby cat!” You are the kissiest and snuggliest thing on two legs—your lower lip trembles in the morning if you haven’t properly kissed the departing parent goodbye (“But I need to KISS YOOOOU!”). In the morning you come sleepily staggering into our room before 6 a.m. most days, but then snuggle up and promptly fall asleep, managing with the sprawl of one small body to exile both of your parents to the very edges of the bed while still lying on top of one of them and poking a finger in my eye or my ear.

You love reading book after book some mornings, but you LOVE YOUR FOOD and, unlike your brother who would only stop reading for a waffle with lots and lots of syrup, you’ll interrupt a book to ask, “What’s for breakfast?” And your favorite conversation starter, heard easily three times a day, is the casual, “What’s for supper tomorrow, mama?” Always endearing, but slightly less so when I am hastily trying to figure out what to put on the table for dinner TONIGHT.

Ice cream birthday cone at the farm after a morning of strawberry picking.

Unlike your outgoing brother, sometimes the world is just too much for you, especially in the form of circle time at various toddler groups and classes. You might just die if you couldn’t cling to me like a monkey during those times (and when you can’t, you sob your heart out), and I never once had to chase you around music class like I did with Will. Your shy streak is deeply embedded, but when you decide to emerge from that cocoon, you embrace the world and new opportunities whole-heartedly. You’ve watched your brother spend two years at his beloved nursery school, and now you are eagerly anticipating your own nursery school days coming this fall—we can’t wait to see the different ways that you’ll take on your wonderful new school and new teachers.

What creative being you are! You love to color and cut and glue like your brother, and the two of you can spend hours lost in the tiny world of Playmobil. Your mechanically-inclined self would rather take a battery-operated toy apart to see the inside than actually play with it. You are the prankster and the giggler, and your father and I usually have to turn away so you can’t see us laughing when we try to be stern with you.

You are so incredibly inquisitive and observant, noticing the smallest details that Will might never have seen. (Me either–you get your powers of observation from your daddy, even if you look like a carbon copy of me at your age.) You’ve never been partial to one “thisy” like Will, but instead have a menagerie of blankets and baby animals that all need your tender loving care (and drinks of water), usually when you should be in bed falling asleep.

Which brings me to bedtime. You are newly transitioned to your big boy bed, and love it—no surprise, since we’ve been treating your crib like a daybed since about October. This spring you’ve decided that days with naps mean bedtime past 9 p.m., much to our chagrin. And when you’re still awake at 9 p.m., you fight the good fight, trying to negotiate one more back rub or suggest that you ought to be allowed to “play quietly” in your room. With your battery-powered drill. At 9 p.m. Nice try, Henry.

I look at you sprawled upside in your big boy bed, and wonder how any part of your sturdy, nearly stocky, body could ever have been small, sick and delicate. You startle me every day with how physically capable you are, and you warm my heart every morning and night with your sweet snuggle hugs and marvelous kisses.

We love you, sweet baby Henry! More and more each day. Happy birthday, and we’re so ready to take on THREE with you!

Will picked every one of these himself, stopping to ask, “Is this a good one?” after EACH ONE.

Today, I’m fielding requests of “Can I have another strawberry?” (Can a child actually suffer any physical ailments from eating THAT MANY strawberries?) and “Can I pee standing up, Will says I can?” (SAY NO if you get this question. I have no words for this, but picture a writhing runaway hose with the water on full blast.) and my more thoughtful birthday reflections will have to wait til this evening, after I figure out how to make a fire truck cake.

Well, HELLO, strawberry. How you doin’?

We’ve had a great day so far, though—we were there for opening bell on strawberry picking season this morning, and picked 18 pounds without even really trying. Then we headed to the farm for animals and ice cream (Cows and Cones, of course.) JUST IN CASE I have no thoughtful reflections later, I do have a few birthday photos. And a few extra strawberries, come on by if you’d like some!

I was lucky enough to visit with my sister and brother-in-law yesterday, and meet the famous twosome causing such a fuss these last few weeks. These little tykes are adjusting quite well to their strange new world, even though it is a bright blue world for them under the bili lights. Both of them are on moderate breathing support, of course—big sister Isabella is nearly breathing room air, while Andrew is misbehaving in the respiratory department and demanded a chest tube for the air leak in his lung. Typical boy. With a mostly stable start for these two, we are hoping their newborn course remains as uncomplicated as possible. Your prayers and good wishes are so welcome and appreciated, thank you all for the loving care and comfort you all have sent to my sister and her family.

Is this the last time I get to call you that, now that you are a big two-year-old-boy? Your nurses tagged you with that title as soon as we named you, but I’m not sure if the laughing, mischievous toddler that you are today can will tolerate that much longer.

Henry’s hospital name tag

Holding you last night before bed, I was overwhelmed at how far you’ve come in just two years. I love to hear you say your name (Haan-reee!) so I asked, “Where’s Henry?” You foiled me on that one, by laughing, patting my arm and saying, “Right here, Mama!”

You sing with a repertoire ranging from “Twinkle, Twinkle” and “Wiggle, Wiggle” from music class to “ABCs” and “Itsy Bitsy Spider.” When you begin the spider song, you put your hands in spider position and then wait expectantly for the rest of us to follow your example before beginning the song.

When one of us sneezes, coughs or blows our nose, you interrupt whatever you are doing to say, “Blesh you, Mama!” Or Daddy or Wo-Wo. Your sweet voice makes us laugh as you earnestly repeat everything around you.

You are such an early bird! You wake up, usually before 6 a.m., and insist on going “d’stairs!” Then, nestled in one of our laps and reading books on the couch, you’ll yawn, rub your eyes and say, “TIRED!” (Us too, Henry, us too.) All this from the boy who slept through his first six months of life.

Henry, six weeks old

All of a sudden, you love to eat. The boy who once only ate frozen peas, blueberries and raisins now has a startling affinity for food and lots of it. Your list of favorites are wide ranging, too—pancakes, waffles, vanilla soy milk, black olives, pizza, broccoli, boiled eggs, applesauce, oh, and pork, of all things. Pork tenderloin, breakfast sausage from the local butcher, sliced ham—it disappears when we place it in front of you. You, like your brother, can’t get enough fruit, and you can eat as much of it, if not more, than he can.

After outgrowing a trinity of food allergies (milk, soy and egg), you’ve only been denied nuts and chocolate. Since Easter you’ve been well aware of “CHOCOLATE CANDY, PLEASE, HAVE SOME, WANT SOME, PLEASE, CANDY!” Just the possibility of chocolate inspired your longest sentence to date and guess what—you get to have some for the first time today. Life is good, Henry, and about to get even better.

You love to walk up and down the stairs by yourself, saying “I do it!” if anyone tries to carry you. You’re a skilled climber, and although you can swing your leg up over the rail of your crib, your contented personality seems to mean that you haven’t decided to climb out of it yet, THANK YOU, ALL THINGS HOLY. If we get even another week in the crib before you shimmy over the rail, I’ll owe something HYUGE in the cosmic sense.

Henry, 23 months

You broke my heart a little when you recently stopped calling banjos “banga-boes,” but calling your daily dose of yogurt and blueberries “gogurk and babies” makes my heart sing, and your insistence that applesauce is called “OSS” is fine with me.

When you were a newborn you sometimes got “accidentally” bumped by your brother. And when you began to play together, your brother often thought it was fair game to snatch your toys. I would whisper in your ear, “Henry, the first time you swat him, I will look the other way.” And look away I did, but now I sometimes have to rescue Will. Guess you really are a tough guy—one who is awfully cute when he says, oh-so-contritely, “Sorry, Wo-wo!”

I look at your sturdy body—your round toddler belly, the face smeared with blueberries and oatmeal, your impossibly long legs, your scratched and scuffed knees and the blue play dough under your fingernails—and wonder how any part of you could ever have been so delicate as to fail you. Visiting with one of your NICU nurses a few weeks ago, it took us both a minute or two to find your sole remaining badge of courage—the small white scar near your armpit, leftover from your chest tube so long ago. You were laughing as we turned you upside down and tickled you while looking for it.

Henry, 16 days old

Just recently I updated my notes on the computer for your teachers as you moved up to a new classroom in your child care center. I reread last year’s file in amazement—words like critically ill, respiratory distress, ventilator and preemie swam in front of my eyes and seemed entirely displaced on these notes about a perfectly healthy almost-two-year-old boy.

And a brief tutorial to help you understand just how incredibly fabulous this photo is. Which may not have been obvious as first glance.

The March of Dimes WalkAmerica event, April 1984, suburban New York.

Celebrity walker? Local resident John Schneider of the Dukes of Hazzard.

That’s me in the glasses and disdainful look. And the purse.

1a. The Expression

Facial expression is fabulous example of bershon, perhaps earliest known example in my photo collection. Frequently accompanied with eye roll and no-paparazzi-please-hand-in-front-of-face-gesture. If my children ever do that to me, I will buy imported chocolates and fine wine with their college funds. My mother was a SAINT to put up with me.

Friend Joanne graces my mother with a pretty smile. No bershon for her.

1b. The Glasses

While I looked like an owl or giant bug in my apricot-colored frames, I was part of a HUGE trend sweeping St. Mary’s School. When I searched the albums for this photo, I noticed TWO OTHERS in frames just as big and bug-like as mine. HOT, you might say

2. The Purses

If I remember correctly, Le Sport Sacs were the required vessel for us in seventh or eighth grade which is, I think, when this photo was taken. Joanne’s was a sophisticated gray and navy pin check; mine was classic navy. I’m sure both of them had these in them:

And maybe one of these:

And definitely one of these, even though I was walking with a friend. She had hers, too.

We were both listening to either:

A) Madonna

B) The Police

C) Michael Jackson or possibly

D) Air Supply

3. The Other People in the Photo

Not related to me or my friend, yet in my photo album for all time. My whole photo album from childhood looks like this.

4. The Outfits

Matching ‘big shirts” and while I have no idea what shirt I was wearing underneath (though I can see it is turquoise and my collar is up), I can tell you I was wearing some AWESOME jogging shorts. Probably these:

Word from the groggy mom was that all are doing well, with two babies in the NICU and one already in the well-baby nursery.

She shared the names she THINKS they are going with, but given her loopy state and given the fact that Rushsays, “You know, she might have been giving you the names of the doctors in the OR,” I’ll wait until we get further confirmation to share.

Well, friends, we’ve nearly reached the end of NaBloPoMo, but we’re also nearing the end of another “National Month of” — Prematurity Awareness Month.

It seems like a funny thing to promote awareness of—if you have a preemie or know one, you’re aware of it. And if not, what do you need to be aware of?

Plenty.

We can all be aware of that one in eight children are born prematurely, even to those women with low-risk pregnancies and excellent prenatal care.

We can be aware that premature labor can happen to any pregnant woman at any time.

We can be aware that the economic costs—costs we all share through our insurance premiums—are staggering, with pre-term births costing more than $26 billion a year, or approximately $51,000 per baby. (My million-dollar baby hit $51,000 in expenses just within the first few days of his hospital stay—at one hospital.)

And we can be aware that researchers working to solve so many of the mysteries of pre-term labor are supported in large part by private donations.

Today I look at my healthy 17-month-old boy born at 36 weeks, barely an official “preemie” at all and now hitting so many of his developmental milestones on time or ahead of schedule, and I hardly feel like I have a place in the preemie parenting world. It is a world in which sometruly amazing formerpreemies are thriving despite the feeding challenges, developmental delays, vision problems, mobility impairments or other lingering side effects of prematurity.

But then I look back on the extraordinary life-saving therapies Henry received, some that even a baby born half his size might never need, and I know that I have earned my preemie parent stripes in the trenches like any other NICU parent, even if our time there was far shorter than for some.

I know that I don’t wish it on any other parent and would do anything I could to help another family avoid this. And I’m so grateful for the combination of expert neonatal clinicians and the generations of medical research that, together, allowed us to bring our baby home.

Click here to learn more about the March of Dimes and their Take Action campaign.

I was tagged by funny supermom Hallie to generate a list of 26 facts about myself using the alphabet, but since A) I’m not THAT interesting and B) ABCs seem to be representative of my parenting life, I thought I would give you the motherhood edition of ABCs.

Do I get to count A and B from my first paragraph? No? Okay, then.

Henry & Will in June 2007. Last time I got them in the same frame, I think.

My ABCs of motherhood

A is for apple, of course. Haven’t you read ANY alphabet books? Apples are an essential tool in my mothering toolbelt, since I can get Henry to sit in his high chair and gnaw on a peeled apple for a good 20 minutes while I do frivolous things like unload the dishwasher and make dinner. When I hear a thunk and “Uh-oh! Ap-oool!” I know my time is up. And then I have to pick that slimy ball of half-gnawed fruit pulp off the floor. Which wouldn’t be so bad if the floor was, you know, pristine.

B is for bath. Where two dirty boys splash and play and laugh and emerge as slippery, sweet-smelling boys ready for their cozy pajamas. Also, mama’s oasis some nights.

C is for counting, as in “Mom, I counted to eleven-forty-three!” Or alternately, “I’m going to count to three! One, two…” Does anyone ever GET to three?

D is for do you think there will ever be a day when I walk across the kitchen floor without tripping on a toy?

E is for eating, something neither of my children really do, at least at mealtimes. I am sure someday I will look back on this time and laugh as my teenage boys scrounge for food, but for now, I really wish they would EAT something!

F is for Froggy, Will’s in utero nickname, bestowed upon him by his then five-year-old friend Lydia. He has an impressive frog collection to show for it.

G is for “Go!”—one of Henry’s favorite words these days. Whenever we seem to be making a movement towards the door (jackets and shoes appear, diaper bag comes out) he starts running around saying, ” ‘kay, GO!”

H is for my sweet baby Henry who is my hero for weathering the dark storm of his early days. I love you with every bit of my being, and cheer all your daily successes, which are all the sweeter given where you started from.

I is for ice cream and incentives, two things that went hand in hand with Will’s potty training. Whatever works, I say.

L is for love, love, love my mama job, even if it is sometimes 100% harder than my office job.

M is for “maybe tomorrow,” which feels like my default response some days.

N is for delicious newborns who keep us up at night and have leaky diapers, but enchant us with their addictive baby scent and tiny parts and ensure the future of the human race with their exquisite sweetness.

O is for online, you know THE INTERNET. Something this parent could never do without.

P is for parenting partner. I am so lucky that my boys have a wonderful, loving involved father who would be a better stay-at-home parent than I would be!

Q is for quail, of course. See any alphabet book.

R is for running me ragged, something these two boys are so good at!

S is for smiles, because those sweet childish smiles are reason to LIVE. Nothing like them.

T is for “whoa, Nellie, are we done with this TEETHING thing yet?” Henry is getting through the teething thing much better these days, and is sleeping through the night again. He was on thin ice for a few days, I’ll tell you that!

U is for ultrasound, one of the most exciting events in a pregnant lady’s life. (That, and the pint of ice cream in the freezer.)

V is for the toddler and preschooler point of VIEW. They can make us crazy with their lack of common sense (“traffic? Fun!”) and amaze us with their ability to learn and explore—who knew how fun it could be to pretend your breast pump is a gas station? There is nothing like getting down on the floor and seeing the world through the eyes of these little beings.

W for my beloved first-born William, with the deep, soulful eyes that can make me tear up just looking into them. When you were born I discovered it is possible to love someone with all your heart even before knowing them. Or maybe I just knew you all along.

X is for all the chest x-rays Henry had as a newborn. May you never need another, baby boy!

Y is for “Why, Mommy?”— a question I hear 400 times a day.

Z is for every mom’s emergency dinner, piZZa!

So there you have it. I tag Casey at Moosh in Indy and Christina at Momology, if you so desire to show us YOUR ABCs!

Again, my medical professional friends and relatives, please let me know if I got something wrong. As I said, our medical team taught us well, but it is entirely possible I lost something in my interpretation of the facts.

We celebrated a big day this week: one year since Henry came home from the hospital.

Our big celebration consisted of sitting in the backyard on a steamy hot night with a cold beer, watching Will laughing and jumping through the sprinkler and cheering Henry as he chased his rubber ball, all while marveling at how differently fragile life felt just a year ago. And then we turned on the grill and explained to Will that beer is a GROWNUP drink and he wouldn’t like it anyway.

I left you in Part 2 as Henry was wheeled off to his ambulance, mostly because I needed a break at that point. And, truth be told, it was probably the lowest point of his illness, so anything after that will be more upbeat. It was just so unbelievably hard to process that our robust 36-weeker, hardly a “real” preemie, went from having his breathing monitored overnight as a precautionary measure to this unimaginable scenario.

Name tag on his warmer at the first hospital, made by his nurse practitioner.

When we got to Yale, his nurse, an experienced NICU practitioner, didn’t pull any punches with the gravity of his condition. She hugged me tight and said, “We are doing everything that can be done for Henry. Now he just has to decide he wants to be here with us. And he will.”

Oscillating ventilator shaaaaaaaaking away at 700 breaths a minute.

We watched as he labored on the oscillating ventilator, despite his morphine drip to keep him completely sedated — he had already been dosed with morphine and Ativan while on the conventional ventilator, but the experience of being on the oscillator, rapidly puffing the lungs with nearly 700 “breaths” a minute is such an inhuman way to breathe that total sedation is essential.

His nurses there were as wonderful as the ones we had left at the smaller hospital. Our first nurse there was the most incredible blend of skilled neonatal clinician, psychotherapist, engineer, educator and friend, orienting us to the harsh realities of having a baby at this busy, urban hospital—and so many of his nurses there shared similar characteristics. Oversubscribed by more than 10 babies when Henry was there, his nurses still found time to make a name tag for his warmer and share some of kindest gestures I could imagine.

One nurse on the overnight shift exclaimed when I called at 2 a.m. to check in, “I just met Henry tonight, and he is such a Henry! What a perfect name for him!” I don’t know what my silent, intubated and sedated infant did to live up to his name, but her warm words gave me confidence and inspiration—permission to imagine Henry as the healthy baby he would ultimately become.

On the oscillator, with chest tube set to water seal.

And finally, after just a few days there, his attending physician changed our entire outlook on Henry’s illness with the first guarantee anyone had given us about him: she gave us the daily update after rounds one morning, and then reached over and patted my hand, saying, “This is FIXABLE. It will take a while, but Henry is going to go home with you, and he is going to be just fine.”

Henry received three more doses of surfactant while on the oscillator, and we watched and waited. His desats were still too significant to hold him, but after three days on the oscillator, we registered the first real victories of his newborn course: they began to wean down his settings and he tolerated it, while a head ultrasound revealed normal condition with no brain bleeds. His chest tube was set to water seal (the last step before removing it—the water allows his team to watch for bubbles, like in a tire with a hole), and the biggest news of his young life—his team cautiously stepped him down to the conventional ventilator, keeping the oscillator tube at the ready for the first 24 hours.

That same day, Henry’s nurse looked at me and said, “Wanna hold him?” I was terrified to even try, but she explained that everything with these newborns is a test—take something away and see if the baby can take it. Or subject them to stress and see if they can manage to hold their sats, or their heart rate and body temperature. He was still sedated, so she and the attending physician decided it was a good time to give it a try.

And it was wonderful.

I had only held him for a short moment after his birth and then not again since.

Holding Henry for the first time since birth while his doctor looked on.

Walking through the maze of warmers and isolettes of the open ward, it was hard not to notice the astoundingly small micropreemies populating the room, including a 25-weeker whose entire foot was the length of my THUMBNAIL. And I don’t have long fingernails. I look at my thumbnail now and can hardly believe it. I hope that baby had an outcome as good as Henry’s.

Henry spent another two days on the vent at the larger hospital, and then with babies stacking up to the rafters at the acute care NICU, they transported him back to our local hospital NICU. We were thrilled to have him back there.

And after another day there, Henry ticked off a few more milestones: he traded the ventilator for his old friend, the nasal canula, he began the hard work of kicking his morphine habit after his days of sedation (may you never have to witness a newborn with withdrawl tremors) and snuggled with Dad for Father’s Day. He struggled a little for a few days after extubation, but a few rounds on the nebulizer with Albuterol, plus some stern pep talks from his nurse practitioner helped him avoid reintubation. At the same time he received doses of a diuretic, and the puffy, immobile baby we had seen on the vent started shedding water to look more like the newborn we met at birth.

Henry off the vent and on supplemental oxygen via nasal canula — the tube in his mouth is for feedings. The heart is from his lovely, wonderful nurses who put love in everything they do for our babies.

Now that Henry had decided to work on this breathing thing on his own and was ending his course of IV antibiotics, it was time to start talking about the all-important checklist of things that Henry had to accomplish to go home. He had to hold his sats at a target level (97-100%), he had to get off the radiant warmer and hold his body temp in an open crib (the plastic bassinettes used for newborns in regular maternity rooms) and most importantly, he had to learn to feed. The complicated task of sucking and swallowing while breathing can even be a challenge for some healthy full-term newborns, and it is especially tough to coordinate while still learning to breathe. His first feed was 12 ccs of breast milk delivered via syringe down his nasogastric tube, and if you are wondering what 12 ccs looks like, you wiped it off the counter the last time you did the dishes. But still!

Henry with eyes open for the first time! Day of life #13

We tried nursing and bottle feeding later that day, but was he was still too sleepy and uncoordinated to breathe and eat at the same time. But with the help of his nurses and our excellent lactation consultant, we persevered, and within days Henry was beginning to get the idea. At the same time he was shedding equipment right and left—his umbilical arterial line was removed, his IV was removed, his chest tube was removed and finally, he was breathing room air ON HIS OWN.

Henry looking like a real baby—dressed and swaddled, no breathing support, with just the NG tube for feedings and his monitor leads under the blanket.

Now that he was learning to feed, the final hurdle was to get him to take enough milk without having to supplement via gavage feeding, down his NG tube. The pattern was to feed until he was exhausted and asleep (about, well, a minute), then hold him while supplementing his feed while he slept off the effort. When I arrived one evening to start his now nightly bath and weigh-in, his nurse greeted me with good news—if he had gained any weight in the last 24 hours, we had the go-ahead to remove the NG tube and proceed with bottle and breastfeeding exclusively.

We stripped him, put him on the scale and….one gram! He had gained one gram in 24 hours. His nurse hugged me and said, “That’s a weight gain in my book!” And so Henry got rid of his tubes, and was left with just monitor leads. It was truly remarkable to see him wearing clothes and swaddled like a regular newborn.

Once Henry was well enough to be covered, his nurses dressed him in fetching preemie outfits from the NICU wardrobe, complete with coordinating blankets. This handmade green blanket came home with us as a reminder of the warmth and comfort he received at our local NICU.

As Henry began to feed, I spent overnights in the family room on the unit, and one night got a special bonus—written permission from the attending to try “rooming in”—Henry slept in his bassinette in my room while the night nurses stayed vigilant on his monitors. It was the most wonderful and scary feeling to be alone with this baby for the first time—for his whole illness we had just felt like bystanders next to the clinicians who were really taking care of him, and now, finally, it was MY job to take care of him. It was also the first time since birth that he had ever been in the dark.

Taking off the monitor leads.

His rig at the beginning—day of life #2

Same room, look at the difference in equipment around him! Day of life #16

Henry continued to improve his feeding skills, slowly but surely, and his doctors and nurses starting saying that magic word—HOME. He still was a sleepy, sleepy baby with sometimes too rapid respirations, but he was feeding, holding his body temperature in his open crib and holding his sats between 98-100% on room air. He passed the car seat challenge that all NICU babies take before discharge (an hour and a half on the monitors while sitting in his car seat), and it was time to take this boy home.

And so we did.

Henry in his first hour home, day of life #16.

Will (22 months) and Henry (16 days), together for the first time.

And as a little preview of his one-year slide show still to come, I leave you with this. Apologies for the terrible cinematography and hack editing job!

But I wanted to post because the theme today at Picture This is “begin.”

And it would have felt like a great beginning to post the end of Henry’s story, but instead I will post this image, taken in Henry’s first hour home from the hospital, one year ago. Because this feels like the best way I can interpret “begin.”

Hank and What?

For those of you looking for Anna Sawin's photography blog—you've arrived.

For those of you wondering why on earth it is called Hank & Willie, this blog began many moons ago as an electronic baby book for my wee ones, Will and Henry.

It has long since grown into a photography blog, a food blog, a family blog and so many other things. While I know the blog will continue to evolve and showcase the latest in my life and work, I'm kind of attached to the name.